Health Secretary Wes Streeting has been urged to act after it emerged up to 20 people with deadly motor neurone disease are being denied a groundbreaking and life-extending drug - despite it being offered free.

Last week Ian Byrne, Labour MP for Liverpool West Derby, and chair of the all party parliamentary group on Motor Neurone Disease (MND) urged Mr Streeting to urgently intervene in what campaigners have described as a "cruel" postcode lottery.

He highlighted the case of 19-year-old Lillia Jakeman who was told she could be treated with the drug, torfersen, when she was diagnosed with the devastating degenerative condition last August. However her local trust has denied her access to the drug while it awaits regulatory approval by the National Institute for Health and Care Excellence (NICE).

The drug has been made available to the majority of other patients - approximately 45 - who could benefit after trials showed it could slow and, in some cases, even halt or improve the symptoms of MND for patients with this form of the condition.

It has been available to patients in the UK under an early access programme on the condition that the NHS provides time and resources for the monthly lumber puncture under the care of specialists.

However University Hospital Southampton said it did not have funding to provide the drug, made by Biogen, to Ms Jakeman. It is one of several hospitals which have refused access.

Lillia is one of 2 percent of MND patients whose condition is linked to a SOD1 gene variation.

In a direct appeal to ministers last Wednesday (28 Jan) Mr Byrne told Parliament: "Will the deputy Prime Minister work with me, MPs from across the house, the Department of Health and Social Care ministers as well as NHS bosses to deliver fare access to all living with this rare form of motor neurone disease?"

He told the Sunday Express: "This is an injustice and we have been speaking to families, some of whom I've been lucky enough to get it. They can see improvements and it has been remarkable."

He added: "We need to get this drug into the 20 people who need it and cannot get it and we also need to look at flaws in the system of NICE which has yet to approve it. Ministers were listening and Wes Streeting was nodding away when I spoke about it in Parliament yesterday and we hope he will discuss it with NHS bosses."

The plea came as Lillia's family completed a five-day walk from Southampton to Westminster, arriving at Downing Street with a petition to demand urgent action.

Lillia, from Romsey in Hampshire, now uses a wheelchair as her condition worsens. Her family was told tofersen could stop the disease progressing further.

Her stepmother Rachel Jakeman, a 54-year-old GP, said: "This is such an injustice. The NHS Trust should not make such an individual decision. This drug is a national and international priority. It is the first drug of it's kind and is taking so long for NICE to approve even though it has been available in the United States for three years.

The NICE process is too slow and inappropriate for people with neurodegenerative and life limiting conditions. The process is too slow and this is not appropriate."

Lillia first noticed symptoms over four years ago when she began to fall, and found it harder to walk, however the condition was not identified and for four years she was diagnosed as having a 'neurological disorder.'

She was finally diagnosed with MND last August and told she could be treated with the new drug. She was given a leaflet explaining how it works. But despite being referred to various specialist hospitals across the country she has been denied the revolutionary drug due to lack of hospital capacity.

Rachel says Lillia has been affected both mentally and physically by being blocked from treatment: "Lillia is struggling. She has become incredibly anxious, reclusive and finds it difficult to take part in life. She is very down and calls it mental cruelty. She has been left in a fight or flight. She cannot always face seeing the family and she will cancel at the last minute. She has been left in a fight and flight situation and very let down. It's cruel. I have worked in end of life care and this is the worst thing I've ever come across. She's been left in limbo and denied."

Rachel says Lillia's physical condition has also worsened. "She has lost power in her fingers. She used to do art and Lego but now that means she cannot. She still has a use of her thumbs which means she can still use an electric wheelchair, but she could no longer stand up independently and needs to be lifted.

"Her condition has worsened and should have been picked up earlier. Time is of the essence however, her local hospital Southampton and other hospitals have refused to fund this pathway, even though the drug is being delivered for free."

She added: The more I've looked at this the more I feel so passionate about it. This is a wonder drug, and if we don't get it right for this drug, my worry is, you won't get it right for other drugs coming down the line."

Last week there was an apparent breakthrough following calls from the Sunday Express. In a statement the MND Association said it had now confirmed with Southampton University Hospital Trust that everyone who needed access to the treatment would now get it. However Lillia's family said it had not been informed of this.

In a statement the Motor Neurone Disease Association welcomed the announcement.

Tanya Curry, Chief Executive of the MND Association, said: "This is a vital and positive step forward for people affected by this devastating disease - this decision by University Hospital Southampton NHS Foundation Trust could be life-saving.

"While we strongly disagreed with the Trust's original decision, it deserves credit for the action it has now taken.

"We are, of course, delighted at this decision. But our work doesn't stop. Southampton has proved change is possible. We will continue campaigning until that change happens for everyone."